Carers

Calranthe

Calranthe

Calranthe

Associate
Joined
5 Oct 2007
Posts
620
I have met many carers in my life, to me they are the real heroes they do what most of us cannot it does not matter if it is for a loved one or a friend a carer is an amazing person, this thread is for both carers and those interested in knowing what we deal with to come and talk, discuss and maybe make a few new friends.

Having a friend who is a carer is a great life survival trait to have, these are people who give up there own life to care for another human being, who when tragedy happens instead of freezing or walking away they step into the firing line they have proved there worth when the ^&*^ hits the fan, proved loyalty, after seeing the worst life can throw at them the know people and friends matter far more than anything material.

Most carers can not be pacifists by our very nature we have to fight everything from the government to the NHS to do right by the person we care for, we are the bane of anyone who treats those we care for as a number.

They can be the most blunt but genuine people in the world have very little patience for idiots or time wasters, lies do not sit well with them.

You may not want to bother a carer friend with your problems but when they ask you how you are its not like most so called friends its not just a polite bit of conversation they actually want to know, caring isn't something you switch off and funnily enough helping you with your problems give them a break from the big stuff.

We do not even need to make a conscious choice about our career or dreams we just do what needs to be done.

We do it for love and care.

But it is not something I would wish on anyone.

Not only are you usually facing a life threatening illness or harm to one you deeply care for but no one really knows what you go through.

You will be mostly alone and fighting battles no one else can.

The government will offer you a pittance for being a carer and even worse if you are on benefits they take the amount they give you off one of the other benefits. :confused:

Doctors will ignore you even though you are there 24/7, DWP will class anything you say as biased and you will have to fight every day to get them to listen.

You will probably be self taught in many life skills not because you want to but because you are all there is, Nurses and front line responders will treat you like heroes because even they get to get away from it all at the end of a shift.


How can you help a carer?

Make friends, chat, have a laugh most carers I know like most health care professionals have a kinda twisted sense of humour because of all that we see, you gotta laugh at something.

We appreciate our down time but sometimes need to be poked in that direction.

The biggest flaws carers have is most of us never see anything we do as special, we have trouble asking for help and caring for ourselves is never a priority.

To put it simply if you have a friend who is a carer, look after them because they are the first person who will be there if something bad happens to you.
 
And yet you're just getting on with it without playing the role of humble martyr on the internet and that's what I like about you.

Give this man a gold pig.
 
arctine said:
And yet you're just getting on with it without playing the role of humble martyr on the internet and that's what I like about you.

Give this man a gold pig.
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Ahh so you thought I was talking about myself if it sounded like martyr then that was not intended.

But after rereading what I wrote, it does look like that, could I have wrote it differently no, carers are heroes and carers are rare, for every carer that does what has to be done there are many who walk away, I saw many strangers panic in the assessment wards at North Staffordshire hospital and just walk out.

I was once drinking a cup of coffee in the day room while my wife was having a series of test, a women was on the phone and the one side of the conversation I heard went like this "I'm going in to see sis now, call me in 5 minutes and tell me there is a work emergency, I can't stand these places they make me heave"
 
Why did I write this post not for myself if it was for myself the other posts I have written better serve as an aisle of communication but this is how it normally goes for a carer when it starts.

The isolation.

All your friends will offer to help will say the line "if you need us just call" it does not matter how many friends you have 5-100 we as a couple had roughly 50 close friends and by close I mean we spent time every week, we held parties and tabletop games, we hired out local pubs upstairs rooms to host live action roleplay and we went camping together.

If you are not to socially accepted as close to the one you are going to care for (we were just boyfriend and girlfriend) one of your friends will take you aside and suggest you drop her/him like a rotten potato, that "your giving up your whole life, your mad"

Within a week to a month while you are still scrambling to deal with everything your "friends" will become busy and have excuses for not being able to help, one time a friends wife actually forgot to mute the call and asked my friend, its him should I tell him you are busy.

Its understandable humans do not like to be reminded of mortality.

Within a couple of months with us pretty much just after the wedding our friends started to disappear, the most heart wrenching part was two weeks later Paola had a day off from the chemo and I wheeled her around Hanley town center, we saw one of our closest friends in the distance, we started heading towards him and when he saw us he crossed over to the other side of the road and walked away.

It was almost like we were leppers

Fun fact the only person in the last 6 months who has visited us who wasn't a care worker came from this forum, kinda crazy we didn't even notice.

Maybe you think oh people don't want to be around depressing and down people, while I am putting down the darker side of things at the moment as someone from this forum will attest we are just not like that, we only talk about the bad stuff with people who want to, Movies, Games, PC's and BBQ + temporary firepit (as Paola pointed out last night I need to either build a new firepit/bbq or buy one because the old one is well erm the bottom is rusting out of it, we are really positive people otherwise we would never have survived what we did.

Carers don't like to share the burden with others, we isolate ourselves, yes this writing on here is like therapy to me, forcing myself to put down what I usually keep inside.

As a carer you isolate yourself because you do not want to bother anyone.
 
I dunno, I guess in the case where someone becomes a carer by accident as a result of having to care for a loved one then that is one thing - obviously in that situation the person in the role of carer probably does the best job they can. Plenty of carers aren't so great though, there are a lot of useless ones out there. It is a low skilled, low paid job that virtually anyone could do and as a result it can be hard to find the good ones.

Hopefully in the not to distant future lots of basic care functions can be automated and reduce the workload of carers, the easy availability of cameras can help to prevent abuse too.
 
Coping mechanisms
or "I'm alright, your alright"
For every carer this is different.

Lets just state as a given fact that after 20 years I must have developed some coping mechanisms or I would be absolute toast by now.

Chopping up chairs with sword!
When Paola first got ill, I spent 8 hours at hospital each day, 2 hours at the library (before google) learning about A.L.L and after eating something bad for me I would not be able to sleep so I took an old cavalry sword off the wall and deconstructed some old furniture in the back yard until I could not raise the sword off the flood and I stumbled into bed (rinse and repeat for 2 months) that was my life.

I miss that sword.

Books
we had a huge library of books, mostly science fiction and horror, I read a lot.

Dismantle stuff or "Have screwdriver will mess"
I took apart nearly every item in the house from Microwave to Cable box.

Learned Linux
Built one of the early mud games (still going today with 5-10 players)


I went nearly all grey by the time I was 30.

Coping mechanisms that I still use.

Gaming, I love single player games with a story even better if they have a choices.

Camp fire (this one is only 6 months old but I love it).
When we realised how much cardboard waste we would have every day (our local trash people do not pick up the large brown/blue bins for cardboard recycle)
I bought a £20 incinerator from Amazon, just a big bin with a chimney and holes.

Every night from 8-9 or 8-10 I go out burn the cardboard, maybe put a couple of logs in as well to keep it going, all the while listening to my latest Audible audio book with a nice ice water drink, no lights on just the flames of the fire and the sky above.


Future coping plans, once the garden is fully redone I have a spot picked out for a small forge and I get the feeling hitting metal will do me a lot of good.
 
As someone who is a full time carer for my disabled partner and her child with Autism and ADHD I totally get what your saying. We have to fight for every bit of help we get and then go through tribunals and mandatory reconsideration's as they somehow always think were lying.

Yes I really wanted to quit my 30k a year job that allowed me to travel all over Europe to instead spend most of my time indoors and to have zero money and do nothing.

They seriously think most of us choose this life and it drives me mad. I'm with you on looking after your own mental health as I struggle with this sometimes and have now had to find some professional help to keep me in check.

We do absolutely care too much about other people but as you said when you help someone with a little problem like a PC issue or fixing someone's internet it takes your mind off of it.

Would be interesting to see how many other carers we have on the forum (voluntary carers not those in a paid carer job)
 
Dave85 said:
As someone who is a full time carer for my disabled partner and her child with Autism and ADHD I totally get what your saying. We have to fight for every bit of help we get and then go through tribunals and mandatory reconsideration's as they somehow always think were lying.

Yes I really wanted to quit my 30k a year job that allowed me to travel all over Europe to instead spend most of my time indoors and to have zero money and do nothing.

They seriously think most of us choose this life and it drives me mad. I'm with you on looking after your own mental health as I struggle with this sometimes and have now had to find some professional help to keep me in check.

We do absolutely care too much about other people but as you said when you help someone with a little problem like a PC issue or fixing someone's internet it takes your mind off of it.

Would be interesting to see how many other carers we have on the forum (voluntary carers not those in a paid carer job)
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Time and time again I've had to bang my head against the wall that is DWP, it is really fun to be the one 24/7 with the person or persons you are looking after and they refuse to take us as expert testimony or even unbiased.

We save the government 10's of thousands of pounds in care.

I have talked to many carers who have had to get professional help to deal with the frustration and stress, in no way is it being a martyr or elitist to say a lot of people can not understand how bad this can be, its like a whole hidden class of people saving the government huge amounts of money and doubted at every stage.

You sound a lot like me, we are are experts we know more about the situation than anyone else.

But absolutely the helping other people with normal problems is like a breath of fresh air, its okay to bother us we will let you know if we are busy (the blunt and to the point part) we just don't like to bother people.
 
The frustration otherwise known as the never ending battle.
Most carers are looking after someone who is dealing with a problem most people couldn't handle, be it long term disability or disease, its usually something bad.

You want to fight the illness but you can't, you want a target but there is none and you never ever feel like you do enough even when everyone else tell you that you are amazing because this person you adore is still ill and you see it every day.
Imagine that for a second that you have to watch the love of your life go through pain and suffering and you the one person who should be able to can't fix it.

Everyone will tell you that you are doing a wonderful job that they don't know how you keep doing it.

At the same time so many people have scammed or tried to scam the system you also have to fight the government and all its departments.


Now we come to the dark part that no one likes to talk about, that person you look after the one who you spend 24/7 with you become there primary target, after all think about how much they have lost, think about what they are coping with and the only person who they can lash out at is you. me and Paola have had some amazing arguments.

No one I know who does this wanted this role, we do it because no one else can, we do it because we care and love, where others look for the door or dream up excuses we just shrug and get on with it.
 
kedge said:
That's perhaps not always the case though, the truth is in this world this system and many people in it just don't care, it is a very selfish world in a lot of ways from the top down.
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True but I classify that as within the "no one else can" its like in a terrorist situation some will run towards danger and try to help, some will freeze and fall apart others will run the opposite direction or try to hide.

Its something in our core self.

for example the one friend we still had and by friend I mean he came to visit ( he lives quite far away but travelled up for weekends) we did VR and all the fun things, he was a friend of Paola before I even knew him, I found out yesterday that when I told people Paola's Kidneys had failed (5-6 months ago) he removed us from Skype, Steam, Facebook, has blocked our numbers on his phone, he can not handle what Paola is going through, the only reason we didn't notice sooner is because of being so busy sorting out dialysis, this is a person Paola went through 3 months of pain crafting new and unique presents each year for his birthday for the last 10 years.

also those people who don't care, those are the ones that suffer the most if it happens to them, if they end up needing help.
 
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